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Scared of Radiation

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

First time here, looking for comfort and sdvice.
I had a golf ball size tumor removed from my left cheek October 2006. I was told it was an uncommon tumor call Hemangiopericytoma. Having this in my cheek makes me only the second person in the United States and I feel like I hit a brick wall everywhere I go. I have been to three hospitals for second and third opinions and most want me to do radiation. My surgeon however, feels like this is overkill. I want so much to believe he was able to remove the whole tumor but my understanding is that my margins are not clear. As of now I am scheduled to start my 7 weeks of radiation on Jan 30th. I just want to know what to expect from the radiation. How bad will it be? I am 36 yrs old and a single mother of two. I really feel like maybe the radiation will be too much to handle and maybe I should just listen to my surgeon and do the MRI follow up every 6 months. Can anyone help me.....please? Is radiation that bad?

TereB
Posts: 288
Joined: May 2003

Hi Sheila,
There are different ways to see radiation, good and bad. I've had radiation in my head and neck area plus spine and hips many times. So much radiation sometimes I think I glow in the dark!!

Radiation many times affects healthy tissue. I know that in my pelvis I have scar tissue from the radiation. I've had it more than once in that area but it doesn't really bother me. I've had radiation twice in the head/neck area. The first time it affected my pituitary gland and I had an early menopause. It has affected my teeth too. Radiation in my head was done years ago and now there are new ways for using radiation as treatment, more advances in which less damage is done to the healthy tissues.

I do not know anything about your type of tumor. Mine was a rare one, different from yours, that many times grows back after surgery so in my case, radiation would have been good just to make sure. At the time I was first diagnosed, there wasn't much information around about my type of tumor. Things have changed over the years.

I cannot tell you if radiation is an overkill or not. Radiation after surgery would kill any remaining tumor cells.

Radiation in the head area causes nausea but these days there are great pills that take care of that. They usually make a "mask" to help protect the healthy tissue and to help them send the radiation to the proper place. After the first 1-2 weeks you will feel tired and it is good to take naps. They will check your blood count once a week, just a prick in a finger. You may loose your appetite, food may taste like cardboard but there are things you can do about that. There usually is no pain and after you finish with your treatment, little by little, all will go back to normal, you will not be so tired, taste and appetite will come back, etc. Your skin might darken in that area, like a bad sunburn but it will go back to normal too, you just need to protect it from the sun. Some of your hair may fall, not all. The thing is that it is a little different for each patient. I am sure the radiation doctors will keep an eye on you and will help you with all the side effects. Each radiation session does not last very long.

First time I had radiation, I felt it was horrible but I didn't know what to expect and that was in 1990. These days it doesn't bother me and I even work half a day when I am in treatment. See if they can use STRT (stereo tactic radiation treatment) for your type of tumor. I had it maybe a year ago, and I thought it was great, recovery was fast and I didn't get sick or was too tired.

Talk to one of the radiation doctors and ask about your treatment, what to expect. Be well informed.

Radiation may not be the best thing in the world but there are times when we really need it. Radiation is not as bad as chemo.

If you follow the surgeon's advise, MRI every six months, what happens if it grows back? More surgery or what? Ask him.

Do you have someone to help you with the kids and with the chores at home? Where do you live? If you have any more questions, you can email me here.

Hugs and prayers,
TereB

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

TereB,
Thank you for your reply. I have been fitted for my "MASK" and I am scheduled to start radiation Tuesday Jan 30th. To say I'm scared is a complete understatement. I have been reading that radiation in the head and neck can cause nausea, why is that?
Did you work while you were getting treatment? What did you eat? They say I will have burns inside my mouth so eating will not be fun :)
My surgeon felt that if I do the MRI every 6 months and the tumor grows back we can just do surgery again. The Oncologist felt that allowing it to grow is not the best route. By the time it's big enough to see on the MRI a cancer cell could find it's way to my lungs. (historically this is where this tumor likes to live). So many of my family members are torn. One of my sisters is totally against radiation. She feels the risks out weight the benefits. My other sister feels I owe it to my children to do everything I can to be here for them. I agree with both of them. The pressure is killing me....I cry a lot. As I'm sure you understand.
I do live with my girlfriend and she helps me with the kids and the house work. I don't know what I would do without her.
May I ask what happened to your teeth? That is the other concern I have. I've never even had a cavity and I'm scared my teeth will fall out after this. One week and counting....I'm scared.
Thank you so much for your help.

TereB
Posts: 288
Joined: May 2003

Hi Sheila,

Being diagnosed with cancer is scary for EVERYONE. First time radiation, MRIs and all that can be nerve wrecking. But we can find the strength inside ourselves to go thru all of this. For MRIs they used to give me a sedative (I felt I was in a coffin) but I no longer need it. My MRIs take a long time but these days I take a nap inside the machine, in spite of the noise. Take little steps, one day at a time and don't lose hope. You will be surprised at how well you do.

I don't know why rad in head/neck area causes nausea but it does. There are medicines to help with the nausea and the best for me has been Zofran which I took every day before going to radiation. My insurance paid for only three pills but my docs gave me samples they had in the office. Ginger Ale helps some people with nausea.

At the time of my first rad I was not working. Now that I am, I work in the morning, in the afternoon I go for treatment and then home to take a nap. It's different for everyone, see how you are feeling.

I ate regular food until I lost my appetite even though the food didn't seem to have any flavor. I usually drink Boost, cold because it is easy and has all the nutrients I need so I do not have to worry about eating. It comes in different flavors. I have a book about diet during rad; I will be happy to copy and send you the info.

I've never had burns in my mouth but I heard other people had. One of my tumors was around my inner ear and the other in the neck so I do not know if that makes a difference as far as sores in the mouth go.

The decision about radiation or not is only yours. In my case, I am pretty sure that if I had had radiation after surgery I wouldn't have so many metastases and a big chance that the tumor would not have grown back. Each tumor is different. For me, having surgery every time the tumor grows is not an option because the first surgery was horrible. Radiation has worked well for me and I will have surgery, any kind, only if it is absolutely necessary. I think I would listen to what the oncologist says but it is a decision that only you can take.

Living with someone who helps you with the kids is a big plus, that will make things a lot easier for you. Your family can also be great for support. Faith in whomever you believe in, helps too.

Radiation damaged one of my salivary glands and I have dry mouth. I always have water with me, lip balm, Biotin gum and spray for dry mouth. Even my toothpaste is for dry mouth. I have no problems with all of this. Many years later after having radiation little pieces of tooth would break off sometimes. My dentist, who works with cancer patients, suggested I replace my upper teeth with implants and I did. My lower teeth have little brown spots, hardly noticeable caused by so much radiation but are okay. My dentist works towards saving teeth. I have my teeth cleaned every four months. Radiation and dry mouth are hard on the teeth but they are not going to fall off just like that. Besides, you already have the advantage of very healthy teeth since you've never had a cavity.

Talk to your radiologist, he knows all the possible side effects and what helps. He will understand about you feeling tired, maybe depressed and whatever. Most people in the radiology dept. are very compassionate and willing to help the patient as they see them everyday.

It is natural to be scared, try not to worry too much, try to relax some. Take a nap when you feel tired, take care of yourself. You are going to be pleasantly surprised when you find out how strong you really are. Besides, you have a nice incentive: Your kids! Mine where very little but we managed.

You are going to be in my thoughts and in my prayers from now on. If you are feeling a little down or just want to talk, come to the survivors chat room any time, we all listen, give support, cry and laugh together, etc. and sometimes that is all we need to feel better and keep going.

Hugs and prayers,
TereB

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

TereB,
Reading your email truly gives me comfort. I think most of my fears are from the unknown. I am prepared to go forward and begin this jurney. I believe that for whatever reason, I have to do this. I know this may sound ridiculous, but losing my hair, saliva gland, and damaging my teeth scare me, not because I'm vain, but because it changes who I am. Changes that I didn't want to make. Changes I can't back. My hair will grow back and the doctor's say I can live just fine without the saliva gland, and who knows maybe my teeth will be just fine. But, will I be a different peron? Will I like that person? Have I lost myself in this whole process...

I would love a copy of the book you mentioned. If it's too much trouble you can just give me the title and author and I can go buy one. Thank you for your generous offer.

You had mentioned that you have had numerous radiation tratments. May I ask how many? You sound very together and confident, I admire you.

I will check out the chat room as soon as I find it....ha ha. My aunt (who is a nurse) told me about this website. I think she was hoping reading other peoples stories would change my mind and not do the radiation. Everyone tells me once you do it, you can't take it back. I understand that, but reading other peoples experiences gives me the courage to go on. It takes away some of my fears.

There are so many people that have completed treatment and many that continue and if they can do it, so can I.

Thank you for eveything....
Sheila

TereB
Posts: 288
Joined: May 2003

Hey Sheila,

We are all scared of the unknown. I felt the same way the first time i had radiation. You say you are prepared to go forward and begin this journey, you are taking the first step!! During the first rad, I was taking a shower and found a LOT of hair in my hands as I shampooed my head. It shocked me and later I was crying about it when my five year old son came in and told me that even if I had three eyes and two noses he would still love me and gave me a big hug. I never worried about hair again. By the way, you do not lose all your hair. To me, finding out about my salivary gland and teeth, didn't upset me as much simply because there was nothing I could do to reverse it and it had already happened. I have learned not to worry about the stuff I cannot change.

Losing some hair (will grow back), salivary gland, maybe problem with teeth, how can that change you? You are still the same person you were before, perhaps with some physical modifications, he, he. Sure, you do not want to make these changes but sometimes things happen and there isn't much we can do about it, except do the best we can at the moment. I don't think you are going to be a different person, you will still be the same old you, with more experience, stronger, etc. I don't think you will get lost in the process. Some people learn to appreciate life more, enjoy the little things and so on. Give yourself a chance, don't start worrying about the things that have not happened yet, deal with them when they occur, just take one day at a time.

I have the books at home and will send the info later.

I actually do not remember exactly how many times I've had rad. Twice in the head/neck area, 2-3 times different places in the spine, 2-3 times right pelvis, 1 time left pelvis. Last rad was the stereotactic which was good, no nausea, no tiredness.

Remember where you go to come here? Below "Discussion" there is CSN Chat 1 and CSN Chat 2, two rooms, click on the one where there are people. If you want to see other people's stories, you can check Personal Web Pages.

You mention people telling you that once you do it, you cannot take it back. I do not regret having radiation because without it I probably wouldn't be around, would have many more metastases and I would be in a lot of pain. Right now I'm not in pain and I am able to enjoy life.

Keep well and try to relax.
TereB

TereB
Posts: 288
Joined: May 2003

Hi Sheila,
These are the books:
1-- Eating Hints - Recipes & Tips for Better Nutrition during Cancer Treatment - NIH Publication No. 90-2079

2-- Radiation Therapy and You - A Guide to Self-Help during Cancer Treatment - NIH Publication No. 01-2227

You can get these books from the US Dept of Health or from the National Cancer Institute (1-800-4-CANCER).

You can write for a copy to: Office of Cancer Communications - National Cancer Institute - Building 31, Room 10A24 - Bethesda, Maryland 20892. Call first in case the address has changed.

I thought you could order them by emailing "Pueblo" but I can't find that email address.

All the best,
TereB

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Hi, there, Sheila. I am a head and neck survivor who had surgery in October of 05 to remove a cancer from my tongue as well as from lymph nodes in the right side of my neck. I didn't have your options but rather the option of having ONLY radiation and chemo, or having surgery first to remove the cancer from my tongue and neck (they grafted tissue from my arm to replace half of my tongue). I understand your trepidation.

I can tell you that following surgery I went through seven weeks of daily radiation (except for weekends). What this entailed was the fitting of a mask that covered my face and my torso down to my chest, a mask I had to wear each day for radiation. Each session consisted of between 30 -45 minutes. I also opted to take two shots of some medicine prior to each session in the hopes of saving at least one of my salivary glands.

I can tell you that as a claustrophobe at heart, I was deathly afraid of the mask, and even told the technicians and doctor the first time that I would never wear it again and would choose to die instead :). Seriously. A little valium in the morning before the sessions helped with this immediately.

I can tell you that I did manage to save a salivary gland and that while I do have to carry a bottle of water and some lip balm with me everywhere, I am doing fine, look normal (unless you look really closely) and am working fulltime.

I can tell you that, yes, during the seven weeks, it was a bear sleeping at night because of the dryness and the exorbitant amount of phlegm that would accumulate. And I can tell you that I was weakend, for sure, and that I still have some swollen tissue in my jaw that will probably stay that way forever.

No big deal. Because I can also tell you that I heeded the advice of my oncologist and radiologist, who worked as a team and told me that surgery followed by the radiation and chemotherapy were my best bet for a successful CURE from this cancer.

I quit smoking, of course, and now, nearly a year and a half later, I feel fine, although occasionally still exhausted (I am still eating mainly through a tube while I learn to eat with my "new" tongue).

All that you will go through with radiation, if it is warranted in your case, is well worth it down the road in my estimation for a more permanent peace of mind. IF IT WARRANTED. All cases are different.

But the pain, such as there is, is bearable. There is more inconvenience and discomfort than pain, really, once you get past the issue of the mask, which seems to be the tough thing for most of us that have gone through it.

I wish you the very best with whatever decision you make. Take care.

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Wow...you are very strong! Can I have some of that strength? Someone should bottle it and sell to the less fortunate. I being one of those people. I guess this is all so new to me I'm still trying to wrap my mind around the fact I have cancer. I have felt so lost and sad the past few months. As much as everyone trys to help me they really can't. I only have one week to decide and I think (at this point) radiation is my best option.
How did you quit smoking? That's my next battle.
I've been fitted for the "Mask" and so far it didn't freak me out too much. I had an MRI today and that was worse. I always feel like they forget I'm in the tunnel :)
Thank you for your reply.....it helped me a lot.
I'm glad I found this site. It's nice to have people that have been through this and can help.
I am so gald you're doing well.
God bless.....

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Sheila: Re the smoking, getting half of your tongue replaced will cure most people, trust me :). JMD brings up a good point that is sometimes overlooked and that is the potential for burning. Actually, it is more than potential, it is a distinct probability. I am not endorsing a product here, as I am not in medical sales (I am computer guy) but wife is Wound Care nurse, and she secured something for me called Biofene (sp?), and applied it religiously to me before and after my rads. I know that I suffered virtually no burn effects, while a guy with the same rad doc as me had to go into hospital AFTER rads for treatment of serious burns....check out that med or one like it...ask your docs... this one works because of what it doesn't contain....it can be used during rads without causing issues...but check with doc first.

Take care

JMD1960
Posts: 5
Joined: Apr 2006

Hi Shelia, I'm male; I'll be 47 on 1/30. I was diagnosed with a rare cancer just above my upper lip; the cancer had also spread to a lymph node in my neck. I had surgery on February 17 2006 to remove the tumor and cancerous lymph node along with 17 other nodes. My surgeon felt that he got all the cancer but to be sure there were no microscopic cancer cells left he recommended 7 weeks of radiation. I was feeling the same way you are feeling right now. I was very scared; I read about all the possible side effects and almost decided not to have the radiation. Your case sounds a bit like mine. Since only one side of my neck was involved (right) I only had to be treated on the one side along with my upper lip area. This kept the side effects to a minimum for me. I experienced a minor soar throat after 5 weeks of treatment. I got dry mouth and still have that today. The worst thing was the fatigue. I was very tired every day after the 3rd week of treatment.By the end of my 7 week I had a fairly bad radiation burn, feels and looks like a bad sunburn, it lasted about a week after treatment then the nice smooth new skin came in. I did not work during my treatment and the oncologist feels that help me get through the treatments better. I took it easy every day and let my body regenerate the cells each day. Since your tumor was on one side you may have few side effects like I did if only one side is treated. Good luck, keep us posted on your progress.

Sdawe
Posts: 14
Joined: Mar 2005

Sheilarhc, My husband had a tumor removed from the base of his tongue in march of 2005. The surgeon told us he thought margins were clear but he decided to go through the 7 weeks of radiation because he is young. I can tell you it was a tough tough 6 months and then everyday after that got a little better. He just had his 2 year Pet Scan yesterday with all clear...it was worth fighting for him to reach this day. Our greatest help was having someone to call on the phone that had been through it and ask all the questions you have everyday. Feel free to email my husband at Sdawe@dc.rr.com (Steve) as he can tell you in detail and had he not had someone (a wonderful person named Kathy) that helped him understand the daily stuff it would have been a lot harder. Feel free to contact him if you wish, we know what you are going through. Take care......Suzann

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Thank you for your reply, I was wondering if you received my email. Not sure if I did it right. Please let me know. Thanks

marcialou42
Posts: 3
Joined: Feb 2007

hi sheila - i am new on this site but your msgs make me cry - i just finished 39 radiation treatments on 12/29 and before the radiation there was chemo - my email is marcialou2000@yahoo.com - if you have any questions please contact me - it is a very tough and scary road - i will be praying for you everyday - you can do this......
marcia

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Steve,
My name is Sheila and your wife replied to my posting on the American Cancer Society web page regarding radiation. October 24th, 2006 I had a golf ball size tumor removed from my left cheek. It has been a difficult few months as I'm sure you know. My surgeon feels that radiation might be overkill but I have decided to go ahead and take the treatment anyway.

I am very nervous and praying I've made the right decision. I actually had my first treatment 1/30 but have not had another one. The doctor's asked me to wait another week so that they could make adjustments so that less radiation effects my left eye. I am legally blind in my right eye and they claim that they were unaware of that. Which I know I told them that b4 we started. Now that I have had this break I'm not sure that I want to continue. Are the risks worth the benefits? Is losing my salivary gland, burning my mouth and throat and now complications with my only good eye worth all the stress. My surgeon says my margins are clear but he seems to be the only one that says that. The other doctors say they are not clear. I was very touched that your wife offered your words of wisdom to help me. I feel like I live in a dark room and I can't seem to find the light switch. To say I'm scared is a huge understatement. May I ask how you handled your radiation? How bad was it? I read that your recent PET scan was clear. (that's wonderful). Whatever information you can provide is appriciated. Please tell your wife she brought tears to my eyes with her offer. It is rare that a perfect stranger is willing to lend a hand. Although I have to say so many people on the web site seem to understand my fears.

Thank you,
Sheila

krayon63
Posts: 3
Joined: Feb 2007

I just finished 30 treatments at the end of January for squamous cell carcinoma in the left nasal passage. Taste is still a thing of the past- my hair is falling out at an alarming rate and my nose feels worse than after surgery. I want to cry but know that I am blessed to be alive. I see the oncologist 3/1, ENT in mid-March and then more tests- Unite in the fight- against Snot Rot! ( hey- it makes me laugh!) In all seriousness- I am very happy to see so many other people who posted about their cancer of the head and neck. I felt very alone at first- seeeing this information has given me a better outlook. So- can anyone tell me- does the hair grow back or should I just cut what I have left of my once long thick locks and get the wig?

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

krayon63
I just started my treatment so no hair loss yet.
I was told by my doctor's it would grow back. Did you lose a lot or just in one area? Did you receive radiation on one side of your face or the whole face?
I'm glad your doing well....

TereB
Posts: 288
Joined: May 2003

Yes Krayon, there is a Santa Claus. Your hair will grow back! All of it. The worst thing for me was being in the shower shampooing my hair and ending with so much hair in my hands. So now I always cut it short before radiation and I don't notice the hair loss even though I know it's happening... at least it is not in my hands.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi krayon63, my name is Tricia. I live in UK and i was diagnosed with SCC of the nasal septum in Aug 05. I also had 30 rounds radiation with chemotherapy as well. I had surgery first to "debulk" the tumor. I was stage 2. Did you wear a mask for radiation treatments? I lost my smell completely and can only taste certain foods, ie spicy, sweet and sour things. I have been coming into the chat room on this site now for almost 18 months and have found it a great help. Nasal septum cancer is quite rare. I have met 2 other people with the same as me, 1 in states and 1 in australia. I am coming up for 19 months cancer free and am delighted. It has been a difficult journey sometimes, but i am pleased to say that for quite some time now I am generally a happy bunny. I would luv to hear from you if you get a few minutes. Tricia

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